Newark, NJ – Inspirational: Nearly 100 Kids With Debilitating illnesses Head to Disney World By Mitzvah Team

Newark, NJ – Motty Katz’s bar mitzvah is just a few days away, but today he undertook a different rite of passage: Taking a trip without his parents.

That’s a major undertaking for Katz and the 86 other young people with severe medical issues with whom he is vacationing in Florida this week, including Ezra Kress, 11, of Highland Park.

“Because he is so medically dependent on us, it’s hard for him to gain independence,” said Ezra’s mother, Adena Kress, as she accompanied her son, riding in a wheelchair, to his departure gate at Newark Liberty International Airport today. “He’s gained so much independence from going on trips like this.”

The week-long excursion is being coordinated by Kids of Courage, a year-old nonprofit group that organizes retreats year-round for kids with complex medical conditions, such as muscular dystrophy, spina bifida and organ transplantation.

“Some kids can’t walk, some kids can’t see, and some kids can’t manage their blood pressure, but every kid has some issue,” said pediatrician Stuart Ditchek, Kids of Courage’s medical director. “These are kids for whom it’s a daily process, a daily challenge to get through their days. We think all of these kids are very, very brave.”
Watch below report from ABC 7

Ditchek said he and co-founders Ari Adlerstein and Howard Kafka started the all-volunteer organization to address a two-fold need. First, he said, they wanted to provide respite for the young people’s families and caregivers.

“Their families are under much more duress and stress than the average family,” said Ditchek, who has worked with high-risk kids in Brooklyn for two decades. “They’re busy chasing down doctor’s appointments, following medical regimens … They don’t have much time for themselves.”

But second, he said, they wanted to give the kids, who often have limited social interactions, a chance to travel and make friends with other young people who know what they’re going through.

“Emotions play a huge role on the immune system and the body,” he said. “When kids are happier … they do better physically.”

Traveling with children with severe physical needs requires special arrangements. To make the trip possible, Continental Airlines arranged for a separate security screening for the kids and the Kids of Courage team, which included two doctors, three paramedics, five nurses, a physical therapist and an emergency medical technician, plus a personal counselor for each camper.

Watch below report from the Star Ledger

The airline also arranged to ship some wheelchairs, which didn’t fit in the cargo hold of their chartered plane, said spokeswoman Julie King.

Today, as they boarded the plane a few at a time, counselors led the group in song as staff members squeezed up and down the aisle, helping some kids transfer to their seats from wheelchairs, and other put on oxygen masks.

The group, which is funded by private donations, was able to secure discounts and special accommodations from many of the places they plan to visit in Florida, including Universal Studios, Disneyworld and the Tampa Bay Rays.

The Arnold Palmer Hospital for Children in Orlando will provide ambulance service and other medical support for the kids, Ditchek said, while the International Plaza Resort and Spa, which will become the Doubletree Resort Orlando-International Drive this fall, gave the group discounted room rates, private access to one of its pools, and a kitchen where they can prepare kosher meals for the children, many of whom are Jewish and observe strict dietary laws.

Perry Goldberger, 19, of Manhattan, is an avid reader and horseback rider who will start college at New York University this fall. She is also a person with familial dysautonomia — a rare genetic condition that affects her balance, breathing, digestion and blood pressure.

Today, as she said goodbye to her family and joyfully greeted her counselor Tara Friedman, who she grew close to on previous trips, she said this vacation will be her first without her family — an important test, she said, “to make sure I can take care of myself.”

For her mom, Laurie Goldberger, letting her daughter go was difficult.

“The one thing I can control is her care,” Goldberger said, explaining Perry’s condition requires constant monitoring, and has landed her in the hospital more than once.

ive years ago, Goldberger said, she would have thought it impossible for Perry to travel independently.

“I’m so proud of her,” Goldberger said. “It’s what every parent wants.”

Motty Katz’ parents, David and Shavy, accompanied their son all the way from their home in Brooklyn to his seat at the front of the airplane. Motty beamed as he was wheeled past the cockpit and met the pilots.

“Thank you,” his mother said to them as she passed, adding, “God is with you. You have angels on this flight.”

For more information on Kids of Courage visit kidsoc.org.